Guest guest Posted November 10, 2003 Report Share Posted November 10, 2003 , Abby takes 2 Creon 5 with each of her 3 7-8 oz. bottles/day and 3 with meals. We feed her a balanced meal from the table with a little extra fat and calories (butter, cheese etc.) and salt. Her stools were really greasy and smelly before her diagnosis - some periods worse than others. Now her stools vary widely in color and consistency but are rarely noticibley greasy. They smell worse than those my other two had. She usually has one BM per day. Joe > Does your daughter take enymes? How many and what is her digestion like, > how many times does she have bowel motion per day > mum toLiam 14 monthswcf > Re: Severity of the disease > > > > Cheryl, > > > > I looked at a few older studies that did suggest that the kids that > > cultured Pa early didn't do as well - BUT - I now have a better > > understanding of why it seemed to look like more of a correlation. I > > think that it's just because Pa is one of the main trouble makers for > > CF'rs and they didn't have a lot of the knowledge or tools that we > > have now. Basically the simple fact that they weren't able to > > eradicate intermittent Pa or manage mucoid Pa as well as they do now > > made these subjects suffer problems sooner than those who didn't > > culture it as early. Some say it is the difference in the mucous, > > that some is more hospitable to it than others while others say > > getting it is just the luck of the draw. I have heard from quite a > > few that cultured it early but weren't colonized with the mucoid > > variant until much later. I talked a long time to a CF doctor who is > > in my family about this subject and he was very reassuring about it. > > He said that even if our Abby did culture some mucoid Pa that it > > wasn't such a huge deal these days. > > > > Abby cultured Pa from a bronch when she was diagnosed at 5 mos. old, > > was treated aggressively with IV tobra, timentin and Tobi for 2 > > weeks. Her throat culture was clear at discharge. She had one clear > > culture 3 mos. later then after 3 more mos. she cultured it again. > > We did 2 weeks Tobi and Cipro. At the end of that course she > > cultured it again. They then performed a bronch a few days later > > which revealed she had no Pa in her lungs and they were very clear > > with hardly any inflammation. A small amount of Pa was obviously in > > her upper airways causing the positive culture. We just had a > > culture done Friday and are awaiting the results. She is completely > > asymptomatic now - no cough, wheeze and in 97th percentile in wt. > > 90th in ht. > > > > If she cultures it this time I may try to get her doctor to put her > > on an azithromycin regimen. Maybe go for a full blown IV course. > > I'm not sure. There are differing schools of thought on this. They > > do know that it comes and goes at first normally then comes to stay. > > In Denmark they have demonstrated that they can eradicate > > intermittent non-mucoid Pa and can delay mucoid Pa by treating very > > aggressively with antibiotics - IV and inhaled. Ask your doc about > > the Danish model. > > > > This subject is one that has horrified us at first but have grown > > much more optimistic. Your post looks like one of mine verbatim a > > few months ago. This disease is in it's " short-rows " , which is an > > old farming expression meaning it is about finished. In the > > meantime, with good care, our kids are going to kick butt - Pa or no > > Pa. Don't fear it. > > > > Joe > > (Dad to 3 girls: Kelsi,7; Chloe 2 3/4 & Abby,15mos.w/cf and fat legs. > > > > > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2009 Report Share Posted October 15, 2009 Joe, Hope you recover soonest so you can hug lovely Joanie all the more!Dyane phoenix ifp 02 Quote Link to comment Share on other sites More sharing options...
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